Just diagnosed LCIS and multifocal ALH

Options
13»

Comments

  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2009

    Thanks Leaf for the websites.  You are always the master at finding these related topics and we are all so grateful to you.

    I am just wondering if anyone who has had testing done in Toronto, do they typically send you directly for a biopsy if something is seen on mammogram?  For now I have to wait to get results for both mammogram and mri, which seems endless.

    I also went for the genetic counselling today and was told I don't qualify for it, because I don't have immediate relatives with breast cancer.  I tried to plead my case, but she passes on the information to a doctor in Toronto who decides, but it doesn't sound promising. I really wish I could have the test.  It would just be a little bit more information to help to decide how to deal with this.  That is assuming that my diagnosis stays as classic LCIS.

    · Share on FacebookShare on Twitter
  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2009

    Well they didn't send me directly for biopsy, but I am scheduled for an ultra sound guided biopsy on Thursday Oct 15 and if they aren't able to get biopsy by ultrasound, they have tentatively booked me for a MRI guided biopsy on Friday Oct 16.  At this point I have not been told what they have seen that warrant's doing more biopsies, but I would rather be safe than sorry.  So I will be making the trip to Toronto yet again.  Then will have to go back on October 26 to get the results.  This whole process is really getting to me. Since February 2009 I have had 5 mammograms, 2 ultrasounds, 2 MRI's, 3 biopsies (stereotactic,excisional and now ultrasound guided). I don't know how long I will last on the high surveillance watch at this rate.

    In the meantime, I was also notified that I do not qualify for the BRCA testing by the genetics counsellor, since there is not breast cancer in my immediate family.  She said even if there was someone in immediate family I would not qualify with LCIS.  This was disappointing although I wasn't too optimistic about getting it.

    · Share on FacebookShare on Twitter
  • leaf
    leaf Member Posts: 8,188
    edited October 2009

    Hi there, formykids!  I thought I'd never get off the 3-6month roller coaster either - I was diagnosed with LCIS and features of ALH in Dec 2005, and excised Jan 2006. Nothing worse was found.  Post excision, I had ultrasounds at 3,6,and 12, and 18 months.  I had mammos at 6 and 12 months.  I had 2 biopsies at 13 months. 

    I know different places differ, but after my 2007 biopsies, I've been on yearly mammos and twice-a-year clinical exams. I think that's the minimum recommended for LCIS.  I think I was on this intense monitoring because I had been just diagnosed, and, of course they could have missed something.  My place does mammos and/or ultrasounds 6 months after a biopsy, regardless of the biopsy results. 

    All my post-excision biopsies were scar tissue, ALH, ductal hyperplasia (not atypical), and nothing worse.

    Obviously, everyone is different.  I, too, have a weak family history of breast cancer, with a paternal grandmother and a maternal aunt.  The genetics counselor said I had more cancer in my family than average, but my risk of having a BRCA mutation was about the same as an average Ashkenazi woman (? about 2-4%).  I opted not to be tested: I'd have to pay for it myself.

    So, my bottom line, is that it is possible to get less intense monitoring with time, if your breasts 'calm down'.  My best wishes to you for boringly benign outcomes.

    · Share on FacebookShare on Twitter

Categories